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The "story"
"I first met Vojo in 1999 when he was a tiny baby. He had only been at Gorna Bistra hospital (about 10 miles north of Zagreb) for one week. As I walked sorrowfully through the rooms of the hospital, trying to hide my almost uncontrollable urge to cry, I heard the faint protesting screams of this little boy. The nurses were, roughly, (or so it must have seemed to him), taking off his dressings, and placing him in a bath of water. His tiny little fingers were trying to push them away, but he soon calmed down, and like any baby began splashing about in the water. He gasped every time the water hit a new part of his body.
Like all Epidermolysis Bullosa (EB) sufferers, and I have now got to know and love quite a few, he was covered in bloody sores, and blisters of skin, from head to foot. In his hair, his ears, on his arms and legs, and on his back. Typically, some parts of the body are seemingly unaffected, but that doesn't last. I've known of the skin being torn right back to bare bone by accident just by catching the skin when removing dressings, but thankfully this is rare. EB can, like many diseases, be more severe in some, than in others. In Vojo's case, it is quite severe. Typically among EB sufferers, Vojo's fingers have already (two years later) begun a process of decline, which results in the fingers closing into a fist, with a covering of skin, and only a pinch between the thumb and the rest of the hand for a grip! Vojislav (or Vojo as everyone calls him) is a delightful, bright, intelligent, captivating, and mischievous six year old, in fact everything he should be at that age…apart from the fact that he is exceptionally sick!
He has a rare skin disease called EB, and his skin bleeds and blisters, internally as well as externally, for no apparent reason. When he was a young baby, his mother put him in a hospital for very severely deformed and mentally ill children. The hospital is poorly funded, and understaffed. Vojo now lives there, unable to communicate with the other children, all of whom have either Spina Bifida or Hydrocephalus. He never sees his mother or any other family members, and yet, he always smiles!
Vojo desperately needs mental stimulation if he is to grow up and have any sort of life. He needs to be able to mix with other children who can talk and play with him. He needs someone's love like any normal child.
Hope and Aid Direct has located Vojo's mother, and she has asked that we do whatever we can to get help. She is a gypsy, and her home is not much more than a ramshackle and dusty old building. It could never be clean enough to support Vojo's needs. Hope and Aid Direct wants (with Vojo's mother's permission) to find either a specialist residential school for young children with disabilities, or a wealthy and caring family (or benefactor), who would like to foster/adopt and/or pay for the medical care that Vojo so desperately needs. Hope and Aid Direct is contacting various organisations, both in Croatia and elsewhere, to seek help.
Hope and Aid Direct has started The Vojislav Despic Fund so that Vojo can receive financial support until such time as other long term help can be provided. My feelings and determination to seek help for Vojo stem from my friendship with other EB sufferers, Julia in the UK, Natasha and Tomislav, and Danny in Zagreb, all of whom I met through and as a result of 'Maggie', in Zagreb. Margaretta Gasic! Bossy, stubborn, confident, intelligent, and brave as hell! Maggie's story will help to explain why we MUST not let the same happen to Vojo!
Her only verbal communication was with the nurses and doctors. The hospital is in the middle of nowhere, in the foothills of beautiful hills, but it is austere and unwelcoming, and all the children's rooms, which are shared, are on the first floor. A lift has only just been installed thanks to an American organisation. However the floors are made of cold stone, and there are not enough nurses to be able to ensure that the children are all taken outside into the fresh air. Maggie, for most of her life in Gorna Bistra, which was her home till she was 18, never had a room of her own, and often lived in one of the corridors. She had a bed, and if she was lucky a cupboard, but no locks or privacy.
Hope and Aid Direct, along with one or two other similar organisations, have been supporting and trying to improve the situation at Gorna Bistra for some years. It has now greatly improved, but is still very much in need of continued support with disposable nappies, baby clothes and sanitary items, but at the time of my first visit in 1996, they did not even have washing machines.
I had been asked to take medical gauze for a child that had to be wrapped in it from head to foot 24 hours a day. They had run out! Little did I know at the time, that it was for Maggie. On my second trip 6 months later, while walking around the hospital rooms, I spotted a teenage girl, with what appeared to be very bandaged hands, sitting at a small table hitting the keys of what could have been a children's typewriter. I later found out that it was Maggie!
A few months later, in October 1997, Maggie was flown over to London with another aid worker who spoke English and Croatian (by an organisation called DEBRA which tries to care for and help EB sufferers) for an operation in St Thomas' Hospital, and I went to visit her.
CONTINUED
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